Wednesday, September 12, 2007

Recovery

Recently, there have been several blogposts around the community on the topic of recovery. As I watch my own son develop over time, I think it would be prudent to make some comments on this issue.

First, some background. My son Jason was diagnosed in January 2005 with "Classic Autism", or "Kanner's Autism". For those familiar with the DSM-IV's diagnostic criteria, there are basically 12 points of diagnosis falling into 3 major categories. Jason was diagnosed as exhibiting 10 of the 12 categories of diagnosis, with 2 being untestable as he had shown at that point no verbal language abilities that could be tested. Upon follow-up testing around 14 months later, he was diagnosed as exhibiting all 12 points. It is important to understand that in most of these categories, his characteristics were not on the extreme end of the possible spectrum of behavior. For example, under (c)(3) "stereotyped and repetitive motor mannerisms (e.g hand or finger flapping or twisting, or complex whole-body movements)", he had several such movements but nothing that was easily observable. Most common for him was very regular hand-clenching, especially when focusing on something such as a book or video, that was very intense and sometimes caused his whole body to shudder with the effort. Another was repeatedly dropping small items from above his forehead to the floor, with the intent to make them fall through his field of peripheral vision. So, using this category of diagnosis as an example, he was displaying the full spectrum of diagnosable autistic behaviors but none of them in their most severe form (such as biting oneself or hitting one's own head repeatedly).
Now he is just under three years beyond his time of diagnosis. And, at this point, he is the type of kid that could be used as an example of a 'recovered' child. Keep in mind that I am using 'recovered' the way someone selling an autism cure may use the term - most often I hear the definition "indistinguishable from his/her peers". To someone unfamiliar with Autism Spectrum Disorder, or someone who only spends a limited amount of time with Jason in a fairly non-problematic setting, Jason has indeed become, in many observable ways, "indistinguishable from his peers" My wife and I know this only means that, in the course of his natural development, some of his most outward behavioral tendencies that are 'autism indicators' have gone away. The onset of verbal language also went a very long ways towards reducing the 'obviousness' of his autism. Does this mean he is any less autistic than he was 2 years ago? Not based on my understanding. What it does mean is several things:
- He has learned effective ways to deal with his sensory integration issues in ways that are not as outwardly expressed as his previous methods were.
- His ability to communicate has increased our understanding of him and his of us, leading to improved ability on both sides to understand and accommodate otherwise difficult situations.
- His ongoing skill acquisition has made it easier for him to progress through his typical days without as much frustration or as many obstacles to success.
- We, as parents, have accepted and understood that expecting him to conform his behavior to situations that his typical peers may be able to is not a fair expectation in many circumstances.

In case someone reading this is new to my blog, it is worth mentioning that we did not choose to treat Jason's autism with biomedical interventions - you know whose that are said to 'cure' autism. As I have stated before, I do believe certain 'biomedical' treatments are appropriate for certain autistic children and adults, though it is certain that none of them will cure the individual of their autism (an example would be that we give Jason melatonin to help him fall asleep more easily. Him getting more sleep may improve his attention and tolerability thresholds, which may give the appearance of 'lessening' his autistic behaviors, but it certainly does not cure him of autism. And even still, we don't give it to him to lessen said behaviors, we just give it to him because falling asleep at a decent hour is healthy for a young child).
I guess one takeaway point here is that, even though I am the parent of a child who could theoretically be paraded across a stage at an Autism One conference as Exhibit A of the latest cure, the claim would be patently false even if we had provided that treatment. We may believe that it was the BM intervention, and if so our belief would be wrong. So if any parents are reading this who have not yet decided which side of the fence they fall on as relates to choices in how to proceed with treating or educating their autistic child, please consider this point carefully. I am certainly not the first to make this observation, but it bears repeating from time to time.

3 comments:

Casdok said...

Accept and love them. Its simple.

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